Our Story about living with MDS has been published

[choijk]

Oh my gosh, I cannot believe that’s how they responded. I am with J.claire, I will never read that magazine again.

I commend you Sandy for all your hard work to get the awareness of MDS out. I been wanting to do something too from my end. I’m currently not working nor going to school so I have the time to either volunteer or do something! But I just don’t know what to do. I’ve signed up on couple of websites to be a volunteer but haven’t heard a response.

I have a friend childhood friend who I am remain still close with, whos a reporter in Springsfield, Illinois and asked her how I can get the awareness of MDS out to the media. She told me to contact one of the local news stations. We’ll see what happens. But in the meanwhile, I will continue to spread the awareness by word of mouth…. Thanks for all your hard work Sandy. You are making a difference in this world.

[SandyB]

Below is the response I sent to Women’s World. Some were asking how I responded.

Kathy:

Thank you very much for reviewing the article. I did not respond sooner as Mike spent last week in the hospital because of an ear infection. Yes, even an ear infection is life threatening for those that have MDS.

There are a few things I wanted to mention with regard to your rejection of the article:

1. Myleodysplasic Syndrome has no cure. Yes, we would be totally elated if we could provide that ending to the article, so it would qualify for printing.

2. This article was only written so that people became more educated about MDS, since it is one of the quickest growing in occurrence in America and around the world. Does your magazine believe at all in public service or just happy endings?

3. I believe this article is full of happy endings for us. Mike is still alive and has beaten the horrific risk of intense chemo-therapy, survived a Septic (often fatal) Infection, and fights everyday to spend more time with his family.

Your publication could make a difference in leading the way to education and support for the thousands of persons afflicted with this disease.

If you choose not to publish our story, that is fine. But please do have someone investigate MDS further and become a champion for those afflicted. A good start would be to go to the MDS-foundation.org website and visit the patient forum to see how people are affected by this no-cure disease.

Thank you,
Sandy Barbor

[Author]

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